Autism Research Studies

Who Can Participate?

• Caregiver and autistic adult pairs living in the US who currently live at home together.
  • Adults 18 years or older with a documented diagnosis of autism
  • A Parent, Caregiver, or Legal Authorized Representative (LAR)
• Must be able to read and write fluent English.

What Will You Do?

• Over the 20 week study period, autistic adults and their caregivers will work together to participate in intervention sessions and complete study measures.

Benefits To You:

• Learn better strategies to support yourself in the home and community.
• You will receive compensation upon completion of questionnaires across study timepoints.

You can contact the research team via email RUBI@drexel.edu, or by calling or texting 215-571-3219 if you would like to learn more about this study or if you there are accessibility issues or concerns.

Click Here to Sign Up: https://outlook.office365.com/book/RUBIforFamiliesandAutisticAdults@drexel0.onmicrosoft.com/

Caregivers of children ages 0–17 who have been diagnosed with autism are invited to complete a brief, anonymous online survey. The survey takes approximately 5–7 minutes to complete. The findings from this research will help inform more meaningful, targeted support for families of children with autism.

Link to survey: https://alliant.qualtrics.com/jfe/form/SV_9RHpFotQAACqoFo

This study is being conducted by Rachel L. Nokes, Master’s student in Communication Disorders at Auburn University, and Dr. Allison M. Plumb, Associate professor in the Auburn University Department of Communication Disorders. You were selected as a possible participant because of your membership in the Autism Society for the state in which you reside.

What will be involved if you participate?

If you decide to participate in this research study, you will be asked to complete an online survey form that includes 59 questions. Your total time commitment will be approximately 20 minutes.

Are there any risks or discomforts associated with participation?

There is always a risk of breach of confidentiality with surveys, but this possibility is being addressed by keeping all responses completely anonymous with no identifying information whatsoever being collected and using all reasonable and customary security measures. The data will be stored behind a secure firewall, and all security updates are applied in a timely fashion.

Are there any benefits to yourself or others?

There is no direct benefit to you for participating in this study, but it is hoped that the results of this study will help to provide needed information on how the parent-clinician relationship is viewed and valued by parents, factors that guide a positive relationship, factors that negatively impact this relationship, and what needs/expectations these parents have. This study’s purpose seeks to provide professionals in speech-language pathology and related fields with valuable information and recommendations to incorporate into family-centered intervention for children with ASD.

Will you receive compensation for participating?

You will receive no compensation for completing this survey; however, your participation would be greatly appreciated.

Are there any costs associated with participation?

There are no costs associated with this survey, except for the few minutes of your time that it takes to complete the survey.

If you change your mind about participating, you can withdraw at any time by closing your browser window. Once you have submitted anonymous data, it cannot be withdrawn due to it being unidentifiable. Your decision about whether or not to participate or to stop participating will not jeopardize your future relations with Auburn University or the Department of Communication Disorders.

Any data obtained in connection with this study will remain anonymous. We will protect your privacy and the data you provide by NOT asking for any identifiable information. Information collected through your participation may be presented at state or national conferences and may be published in a professional journal.

If you have questions about this study, please contact Dr. Allison Plumb at amp0016@auburn.edu.

To begin the survey, click here.

The Autism Society is partnering with Mathematica on the REYAAS Study (Research Support Services for Employment of Young Adults on the Autism Spectrum), sponsored by the U.S. Department of Labor. This study is focused on learning more about the employment experiences of Autistic young adults. More information on the study can be found here: https://www.mathematica.org/projects/research-support-services-for-employment-of-young-adults-on-the-autism-spectrum 

What’s next?

We’re currently inviting individuals to complete a brief pre-screening survey. This short set of questions will determine if you are eligible to participate in the full study. If you are eligible, you’ll be contacted with the next steps. 

Start the pre-screening survey here: 
Start Pre-Survey Here 

Who can complete it?

• The pre-screening survey is intended for Autistic young adults. 
• If you’d like support, a parent, friend, teacher, or another adult (age 18+) can help you fill it out. 
• In some cases, a trusted adult who knows about your job experiences may complete it on your behalf. 

If selected for the full study and you complete the full survey, you will receive a $40 gift card—you can choose between Visa, Amazon, or Uber. 

Your participation is completely voluntary, and your responses will be kept private and only used for research purposes. For any questions, contact Aaron Rock at ASA National, arock@autismsociety.org 

Thank you for considering this opportunity to support research that empowers Autistic individuals in the workplace! 

You are able to participate if you have a family member that has been diagnosed with autism spectrum disorder. Participation includes a one-time electronic survey that will take approximately 11 minutes to complete.

Your participation is voluntary, and you may stop completing the survey at any time you wish. You are expected to experience minimal risk while taking this survey and your participation may support the advancement of accessibility to autism services. Your survey data will be confidential.

Contact Emma Travis, emmatravis@creighton.edu, (763) 438-5115, or Anastasia Kyvelidou, AnastasiaKyvelidou@creighton.edu, (402) 280-5749, with any questions.

If you would like to take the survey please click here: https://blueq.co1.qualtrics.com/jfe/form/SV_6AsgCXugyCVq1U2

Who can participate?

We are inviting mothers and their young children aged 14-month to 36-month-old to take part in the Autism Genetics and Epigenetics Study (AGES). We are looking for both typically developing children and those with developmental delays.

Taking Part in the AGES Study is easy as A-B-C

We designed the AGES study so that most of the research activities can be done at home using a smartphone tool called BabySteps. The study will last 6 months and include one CDD clinic visit.

• Audio Recordings: Your child will carry a small recording device for one day to record their communication patterns.

• BabySteps Smartphone tool: You will do short research activities each week, such as:
  • answering questionnaires
  • responding to app notifications

• Child Genetics: During your child’s visit, we will collect a blood and buccal cheek sample. The purpose is to identify chemical markers from these samples.

You will be paid up to $100 for taking part in this study.

To check your eligibility, please complete this screening form:  https://redcap.icts.uiowa.edu/redcap/surveys/?s=LKHPJ9DWDC4YTKCM 

If you have any questions about the research study itself, please contact us at babysteps@uiowa.edu, or call the Attachment and Neurodevelopment Lab on 319-356-7140.

Click on this link for more information and to fill out the online survey: https://iastate.qualtrics.com/jfe/form/SV_9Y07JRhJ8spVR89

If you have any questions about this study, please directly contact jmphan@iastate.edu. Thank you!

Join a research study about autism to learn people’s views on autism, gene/environment interactions, and co-occurring health conditions via a 60-minute focus group on Zoom.

You may participate if you are in one of the following groups: 

• A person on the autism spectrum who is age 18 and older.
• A caregiver/parent of someone on the autism spectrum.
• A medical provider who has worked with individuals on the autism spectrum and their families.
• An adult sibling (18+) of someone on the autism spectrum.

PARTICIPANTS WILL RECEIVE A $50 GIFT CARD.

If you are interested, please fill out the form at the following link: Interest Form

We feel this is a particularly salient issue at present given recent changes in many major insurance policies as well as state and national initiatives surrounding ASD service provision.

Accordingly, we’ve developed an online survey for caregivers of children with ASD in order to better understand the process of accessing services, including factors affecting decision making in what services to pursue (evidence based vs. non-evidence based), and barriers experienced along the way. We hope you will consider sharing the information with primary caregivers who may be interested in helping us better understand how to improve the process of accessing effective services for ASD.

Here is the link for the anonymous survey, which has been approved by Louisiana State University’s Institutional Review Board. http://lsu.qualtrics.com/jfe/form/SV_3HKbJrmrneXVBCR

Lindsey Willis Williams, MS, CRC
Louisiana State University
Doctoral Student, Clinical Psychology
6000 University Ave # 450, West Des Moines, IA 50266
Phone:(515) 241-2000

Researchers at the Neurodevelopmental Disabilities Lab at Northwestern University are conducting a research study funded by the NIH to explore how developmental, behavioral and neural features may relate to skills in autism and be heritable in families. In particular, the research team is looking for individuals who grew up in Iowa and think they may be related to someone with autism to participate in their study, such as parents and grandparents. This is because they study how performance on the Iowa Test of Basic Skills (ITBS) may relate to autism symptoms in the next generation. Through this work, they are learning more about how genes associated with autism are inherited through generations and may relate to different language and cognitive skills.

STUDY OBJECTIVE: To understand the brain and gene basis of language and related skills in individuals
with autism and their family members.

IMPORTANCE OF STUDY: Involves the use of exciting and innovative technologies for studying language and social features; Helps us further understand genes related to features of autism.

WE ARE LOOKING FOR: Individuals with autism, their parents, and grandparents of any age; Individuals without autism.

PARTICIPATION INCLUDES: Solving puzzles; Completing measures of brain activity; Talking about your friendships and the ways that you relate to other people; Providing a blood sample.

COMPENSATION AND TIME: Participation involves either 1 or 2 visits; Participants will be compensated for their time.

If you or someone you know may be interested in participating, please contact the team at 877-275-7187 or familystudy@northwesternedu. You can also visit their website http://ndl.northwestern.edu to learn more about their work.

The research goal is to measure the characteristics of inclusive participation in the decision-making process. We are asking about past experiences and expectations for the future.
This survey far-reaching goal is to help adults with autism to advocate for their needs for inclusive decision-making processes.

Incentives: 
There will be a chance to win in a lottery to get a gift card in participation in the online survey. Opportunities to participate in drawings will be provided to all eligible participants. They will be entered into a drawing for one of “1 of 6” $50 gift cards for Target. A total of 6 cards will be distributed.
By law, payments to participants are considered taxable income.

Click Here for the Survey:
https://osu.az1.qualtrics.com/jfe/form/SV_e2v2GEJz5SoLPcF

The IRB authorized the research: Study Number 2019B0545.

The Pregnancy Decisions App Project is looking for people who are: 

• 18-50 years old 
• Live in the US 
• Have a developmental disability (including intellectual disability and autism) 
• Able to get pregnant (even if it is unlikely) 

We’re providing a $25 Amazon gift card to anyone who completes the survey. There are researchers available to assist individuals with taking the survey. The survey generally takes between 30-60 minutes to complete. 

Click Here for Survey: https://www.ohsu.edu/university-center-excellence-development-disability/reproductive-health-research

The study will test the usefulness of an online training tool with videos for parents that model parent/child interactions on healthy relationships and sex (discussions about healthy boundaries, refusal skills, pregnancy prevention, STI prevention, seeking help etc.).

Participation will entail participants:

• engage in an audio recorded conversation with their child on a pre-determined topic related to healthy relationships and sex.
• watch the parent/child interaction videos.
• engage in a second audio recorded conversation.

As a thank you for participating, parents and youth will receive $200 and $50 e-gift cards respectively.

SkillFlix ASD Pilot Recruitment Flyer

SkillFlix ASD_Parent Consent Form

SkillFlix ASD_Youth Assent Form

Participants will receive a $30 Amazon gift card electronically as compensation. Please note that participation in the study is voluntary.

Eligibility to participate for autistic adults includes:

• age 18 or older (and their own legal guardian)
• has a formal diagnosis of autism spectrum disorder (verified via report)
• has at least an estimated 6th grade reading level
• can speak and read English

Interested autistic adults can complete a screening survey to see if they are eligible to enroll in the study at the following link: Click here

A flyer with information about the study is attached.

Feel free to reach out to me directly at amahadeo@mednet.ucla.edu, or Hillary at hschiltz@mednet.ucla.edu with any questions regarding the study.

The DN Lab at UCSD is looking for:

• Autistic Adults
• Parents/Caregivers of an Autistic Person
• Relatives of an Autistic Person
• People Who Work with Autistic Persons (e.g. teacher, speech and language therapist, psychologist, social worker, medic, etc)
• Autism Researchers

Check out our Facebook post here: https://www.facebook.com/UCSD.DNLab/posts/pfbid02w8mB2SxWbrpaFv1ybr5kcn98eCj3vEUjB6kqKaE6GnL5W7JqyByNgy3hsfW8Vqoxl

If interested in participating, fill out our survey by clicking here: https://ucsd.co1.qualtrics.com/jfe/form/SV_55DdfvV5K8FuQce

You are eligible to participate if you are:

1. Between 18-50 years old
2. A native speaker of English.
3. A healthy adult with a diagnosis of autism spectrum disorder.

The study will take 30-45 minutes to complete. During the session, you will complete a communicative picture description task. You will be shown multiple pictures and asked to either describe them or identify them. Additionally, you will be asked to complete a demographic survey. All sessions will be completed online using Zoom, a video communication platform. Compensation will be provided.

If you have any questions or are interested in participating in this experiment, please send an email to Hannah Krug, hannah-krug@uiowa.edu, and we can screen you for participation and, if eligible, schedule you for a session.

You can find out more about our research on the following website: communication-memory-mind.lab.uiowa.edu. For a printable flyer, click here.

If you agree to participate, we would like you to participate in an interview, a focus group, or
both. You will also be asked to complete a short survey.

If you are interested in participating, please contact Rima Desai at rima-desai@uiowa.edu or
Michelle McQuistan by phone at 319-335-7524.

If we do not hear from you, we will attempt to contact you two additional times by email and
then three times by phone. If you do not wish to participate or be contacted again, please contact
Dr. Rima Desai or Dr. Michelle McQuistan.

The mission of SPARK is clear: speed up research and advance understanding of autism by creating the nation’s largest autism study. Joining SPARK is simple – register online and provide a DNA sample via a saliva collection kit in the comfort of your own home.

Register in person at the University of Iowa Medical Research Center by contacting us at SPARK-study@uiowa.edu, or visiting www.SPARKforAutism.org/uiowa. Together, we can help spark a better future for all individuals and families affected by autism.

An inter-disciplinary team from the University of Iowa is undertaking a multi-faceted study of high-functioning young adults on the autism spectrum. Our focus is on their decision-making styles and outcomes as they face both routine everyday decisions and, because of their stage in life, life-altering decisions concerning education, employment, and personal relations.

In the current study we focus on comparisons between persons on the spectrum and their caregivers in terms of how persons on the spectrum perceive themselves and how others perceive them.

We are seeking both persons on the spectrum and their caregivers to complete an online survey for which they will be paid $20. If you reply by sending us your contact information, it merely means that you’ve given us permission to contact you later about the details of the study but without implying any commitment on your part.

Beyond the monetary compensation, we hope that you will see this as an opportunity to increase society’s understanding of what persons on the spectrum have to offer.

If you are interested and are at least 18 years old, please respond by indicating your name, your email address and whether you are on the spectrum or are a caretaker for someone on the spectrum. Please respond to the following e-mail address: TCOB-decisionmaking@uiowa.edu

If you are a person on the spectrum and are interested in participating, please share this notice with a caregiver. If both you and your caregiver participate, you will be asked to independently fill out separate surveys and each of you will be compensated.

The Study aims to understand the relationship between level of parenting stress on child’s communication skills. Participants will also receive $40 for your participation.

Eligibility:

• PARENTS OF CHILDREN WITH A DIAGNOSIS OF AUTISM SPECTRUM DISORDER
• CHILDREN MUST SPEAK/SIGN LESS THAN 30 FUNCTIONAL WORDS
• CHILDREN MUST BETWEEN THE AGES OF 4 AND 10 YEARS
• WILLING TO SPEND UP TO 4 HOURS OVER 2-3 CALLS
• LIVE IN MIDWESTERN US

Benefit: This study will include no-cost parent and child assessments administered through parent interviews, including level of parenting stress and children’s communication abilities.

For more information and a clickable flier, click here. For the consent form, click here. If you are interested, please contact Suma Suswaram at suswaram_suma@ku.edu or (785) 331-8805

“IDD” is the term often used to describe situations in which intellectual disability and other disabilities are present. Examples of IDD include autism, behavior disorders, brain injury, cerebral palsy, Down syndrome, fetal alcohol syndrome, intellectual disability, and spina bifida, among many others.

Please answer the following questions about yourself to the best of your ability. We will contact you shortly! Please note: No further information regarding immigration status will be required to participate in this study.

Thank you for taking the time to complete the survey below! If you have any questions, please contact us at projectpathways@umd.edu

Click Here for Survey:  umdsurvey.umd.edu/jfe/form/SV_2bqjUK9DORLH8X4

Participating in SPARK is free and can be done entirely from home.

• Registration takes 20-30 minutes to complete online.
• You will be asked to complete a few online questionnaires after registering.
• SPARK will send you a saliva collection kit that you can mail back for free.
• Individuals with autism are eligible for Amazon gift codes valued up to $50.

Click Here to Learn More and Sign Up: https://sparkforautism.org/?code=mutc

Questions? Email tcresearch@missouri.edu or call 573-303-8405.

Participants will first enroll in the Spectrum for Life – Interconnected Surveys Project (S4L-IS; VUMC IRB approval number: 201086) and then will be able to choose from their preferred survey topics.

The interconnected studies are nationwide surveys conducted entirely online.  The studies cover a variety of topics, including employment, health and wellbeing, bullying, environmental resources, sensation and perception, personality, and characteristics related to autism.

Each survey topic is taken separately.  The time it takes to complete some survey topics is as short as 5 minutes while other topics can take up to an hour to complete.  Participants are able to save and return to the studies. For a printable flyer, click here.

Eligibility: Any autistic identifying person currently working in helping professions/human services.

This online survey will take approximately 30 minutes to complete and eligible participants will receive a $10 gift card.

Click Here for Survey: https://wlu.ca1.qualtrics.com/jfe/form/SV_bw37yj2H4wRQtQW

About the Researcher (A note from Sarah Southey):

As a PhD Candidate in Social Work at Wilfrid Laurier University, and a clinician specializing for 15 years in autistic employment issues, I understand some of the challenges of workplace inclusion/exclusion. Further, as a non-autistic person researching autism, I was able to round out my understanding of the topic by testing and reshaping the survey based on feedback from nine autistic colleagues.